Exactly right. As soon as our illness improves, we're away. Try stopping us! How could we regularly over-do activities and experience crashes otherwise? And look at Maria Grjerpe, who was prescribed Rituximab. She went from bed-ridden to orchestrating a highly motivated international fund-raising campaign, as soon as the Rituximab kicked in.
GET has been proven to be of nearly zero value, but has been hyped to be a cure.

Click to expand...

Bob. If you are treating as per this hypothesis - a BIG IF as the author has said - YOU may need some graded return-to-normal help. What doctor is going to advise a patient who has been as disabled as some of us are - to go run a marathon straight away? Sure for others it might be different. But I'd be bloody cautious and want perhaps some programme that would gently increase my activity levels in accordance with the degree to which I am better able to manage. That could help if I do encounter difficulty. With this hypothesis and even with Rituximab it isn't like taking an aspirin - it can take time. It might not work.

When people with CFS and ME feel better they naturally do the activities that they have not been able to do. GET isn't needed.

Click to expand...

I tend to agree that GET in itself may not do much terms of facilitating recovery from ME/CFS, even if you could block the negative effects of exercise on ME/CFS patients. Nevertheless, it would be good to test the possibility that exercise might help, if you could block the negative effects of exercise in ME/CFS patients.

Though a note of caution should be sounded here: if you subscribe to the view that enteroviruses (like coxsackievirus B and echovirus) are the likely cause of many cases of ME/CFS, it is known that the virulence of enteroviral infections increases during exercise.

For example, this study found that exercise increased the mortality rate in mice with coxsackievirus B3 myocarditis.

This article also notes that coxsackievirus B infection may be amplified by exercise.

Here is another study on exercise-aggravated coxsackievirus B3 murine myocarditis.

I know that enterovirus-associated ME/CFS is not the same thing as enteroviral myocarditis, but these studies do indicate that exercise and enterovirus infections do not go well together.

This study actually on a patient with enterovirus-associated ME/CFS, who Dr Chia treated, found that the patient's enteroviral RNA remained negative until she had a transient symptomatic and virological relapse after vigorous exercise. So here again we see how enteroviruses get more virulent after exercise.

It would certainly be very interesting if blocking the excess pro-inflammatory cytokines hypothesized to come from infection-ridden glial cells in ME/CFS patients prevents the negative effects of exercise, and prevents the post-exertional malaise (PEM). But a cautious approach to testing this would be in order.

When it comes to published papers about GET and the wording it contains I think each can be judged on it's merits. PACE was clearly off of this planet in that respect. Similarly, the writings of 'experts' should be judged accordingly.

Click to expand...

I'd like to see a GET paper which includes a credible hypothetical model of illness, and a helpful description of why GET might help (a small minority of) CFS patients.

But to reiterate: mental symptoms may well be caused by an underlying physical dysfunction, such as a dysfunction in the central or peripheral nervous system. I think that the vast majority of mental disorders will in future be shown to be caused by underlying physical causes.

Click to expand...

Even some psychologists have problems with DSM definitions, as do many others including scientists and physicians. Allen Francis is a notable psychologist example. Here is one of his articles:

I don't really have a problem with 'cognitive disorders', as the definition is more amenable to scientific explanation. Cognition is known to arise from neuronal activity, whereas 'psychology' is more open to woolly, unscientific, near-religious/supernatural explanations.

ME has neurological symptoms, and perhaps these symptoms can have a psychological impact on the lives of some patients. But ME is not a primary cognitive-behavioural disorder.

Click to expand...

My ME/CFS is nearly all cognitive in its nature: I do not suffer from physical post-exertional malaise (I can run a mile without much problem), but I do get mental post-exertional malaise (just three or four hours of ordinary socializing will leave me totally exhausted mentally for two days after, and ramp up my brain fog, sensory hypersensitivity, and other cognitive symptoms).

But we need to get this thread back to its original topic, which the hypothesis that an infection in the vagus nerve might underpin ME/CFS.

Perhaps all the subject matter relating to the definition of the terms psychological, mental, cognitive, should be moved to a different thread.

Bob. If you are treating as per this hypothesis - a BIG IF as the author has said - YOU may need some graded return-to-normal help. What doctor is going to advise a patient who has been as disabled as some of us are - to go run a marathon straight away? Sure for others it might be different. But I'd be bloody cautious and want perhaps some programme that would gently increase my activity levels in accordance with the degree to which I am better able to manage. That could help if I do encounter difficulty.

Click to expand...

Firestormm, personally, I have no doubt that if your illness was successfully treated with a successful biomedical treatment, then you'd be bounding around like Tiger within weeks, with or without a Graded Exercise program.

Firestormm, personally, I have no doubt that if your illness was successfully treated with a successful biomedical treatment, then you'd be bounding around like Tiger within weeks, with or without a Graded Exercise program.

Click to expand...

Christ wouldn't that be GRRREEAATTT! My picture of Tony the Tiger didn't work (bloody system ).

Unfortunately, and I think more realistically, a treatment does not always equate with a cure. Indeed I personally feel that a treatment even of the biomedical pop-a-pill variety will not mean that sort of response. If someone taking Rituximab is able to respond like that then terrific. Be nice to know why - but that's really what is being talked about in that MEA statement I posted yesterday...

OK. The PACE authors would have us believe I seem to remember that GET ALONE was a treatment. This author is saying have a treatment that treats the specific problem and then use perhaps GET to better ensure a return to fitness.

But all of this - as he said - is dependent on the hypothesis not only holding water and being applicable to those identified with the problem (another big if that it relates to everyone with a diagnosis of ME) - but that this problem can be effectively neutralised.

I've just scanned the full paper, and I'm confused. It starts off as a fairly sensible biomedical hypothesis. (I'm not keen on any discussions re 'sickness behaviour', because I don't find the term particularly helpful for a variety of reasons. But the term does not necessarily indicate a cognitive-behavioural disorder. It depends on the context.)

But at the end of the paper, it descends into an unscientific discussion of cognitive-behavioural interventions, apparently based on the following factual error:
"Both cognitive behavioral therapy and graded exercise therapy have been shown in a randomized trial to be helpful for approximately 30% of individuals with CFS [137]" (The reference is the PACE trial.)
In fact, at best, only an extra of 15% of patients responded to treatment with CBT/GET, in the PACE trial. "30%" is an erroneous figure.
(And the average patient was left severely disabled, with no meaningful improvement in objectively measured disability, and no improvements in any other objective endpoint measures.)

In the paper, GET is discussed in terms of its efficacy as a currently available primary treatment (as well as a potential adjunct treatment.)

In terms of currently available treatments, it says:
"Patients should be helped to understand that ... resistance to psychological and behavioral intervention is misguided"
As usual, we are lectured by someone who has misinterpreted and misunderstood the scientific literature, and failed to read widely on the subject.
Patients should choose a therapy that suits them, especially for such a heterogeneous condition such as CFS.
And seeing as, at the very best, CBT/GET have been demonstrated to only help a max of 15% of patients, CFS/ME patients (who have to manage their own illness, by themselves, on a day-to-day basis) have to make complex decisions based on potential harm, before they embark on potentially inappropriate therapies.

"Both cognitive behavioral therapy and graded exercise therapy can convey to understandably despondent individuals suffering from CFS that recovery is possible."
"Recovery"? Sorry? What? Where is the evidence for 'recovery' after treatment with CBT or GET?

"The adamant refusal of some patients to engage in psychological or behavioral treatment strategies should be challenged – with empathy, logic, and information – as medically unadvisable"
Utter arrogance and ignorance. This sort of attitude exemplifies the top-down ignorant approach towards medical 'care' which has caused ME/CFS patients so much harm and distress. Look at Tom Kindlon's paper if you want to understand the persistent under-reporting of harms related to CBT/GET. Look at the MEA and AfME patient surveys, where so many patients have reported experiencing severe harm after CBT/GET. Look at AfME's recent paper on the disparities between clinical research and clinical reality, which explores the reasons for reported harms after treatment with GET. Understand the nature of ME and post-exertional symptomatic flare ups, before telling patients that they are misguided. Understand the history of GET, and the way GET is so often inappropriately implemented. Read the PACE trial before citing inaccurate facts. Find out the deterioration rates for the PACE trial, before assuming that GET is safe. Talk with patients before you patronise them with ignorant lectures based on misinterpretations of research literature.

If the hypothesis suggests a biomedical cure for ME, then why introduce psycho-social hypotheses into the mix? It just confuses the issues, and causes distraction.
If an ME patient were to be biomedically cured then why would they need GET? (Deconditioning is not a primary factor of CFS/ME. The PACE trial disproved that hypothesis.) There would be no post-exertional malaise, and no relapses, so patients could exercise without any long-term consequences, or harm or damage. So pacing and GET would totally redundant for an ex-patient.

If researchers want to be welcomed by the ME patient community then they need to be careful to avoid arrogant, ignorant, misguided and patronising lectures, and they need to be careful not to misinterpret and misrepresent the scientific literature, and they need to be careful not to make misinformed and unscientific clinical judgements. (For example, is there any good quality safety data on prescribing GET to severely affected patients?)

...rant over...

The biomedical hypothesis re vagus nerve infection may or may not have some merit.

Fair point. However, my interpretation of the paper is that the author is suggesting that treatment of the virus will cure the biomedical aspect of ME, but that there will be a longer-lasting cognitive-behavioural element of the illness that prohibits 'recovery' unless also treated with CBT/GET.

The paper states that, for a 'recovery' to be achieved, it is 'crucial' for:

(1) patients to understand that a recovery is possible (with CBT), and​

(2) for the 'atrophy' of long-term muscle deconditioning to be addressed with GET.​

(The paper states: "...both are crucial for recovery.")

I'd like to know what evidence there is for either of these assertions. No evidence is provided, as far as I can see.

I've just scanned the full paper, and I'm confused. It starts off as a fairly sensible biomedical hypothesis. (I'm not keen on any discussions re 'sickness behaviour', because I don't find the term particularly helpful for a variety of reasons. But the term does not necessarily indicate a cognitive-behavioural disorder. It depends on the context.)

But at the end of the paper, it descends into an unscientific discussion of cognitive-behaviour interventions, apparently based on the following factual error:
"Both cognitive behavioral therapy and graded exercise therapy have been shown in a randomized trial to be helpful for approximately 30% of individuals with CFS [137]" (The reference is the PACE trial.)
In fact, at best, only an extra of 15% of patients responded to treatment with CBT/GET, in the PACE trial. "30%" is an erroneous figure.
(And the average patient was left severely disabled, with no meaningful improvement in objectively measured disability, and no improvements in any other objective endpoint measures.)

In the paper, GET is discussed in terms of its efficacy as a currently available primary treatment (as well as a potential adjunct treatment.)

In terms of currently available treatments, it says:
"Patients should be helped to understand that ... resistance to psychological and behavioral intervention is misguided"
As usual, we are lectured by someone who has misinterpreted and misunderstood the scientific literature, and failed to read widely on the subject.
Patients should choose a therapy that suits them, especially for such a heterogeneous condition such as CFS.
And seeing as, as the very best, CBT/GET have been demonstrated to only help a max of 15% of patients, CFS/ME patients (who have to manage their own illness, by themselves, on a day-to-day basis) have to make complex decisions based on potential harm, before they embark on potentially inappropriate therapies.

"Both cognitive behavioral therapy and graded exercise therapy can convey to understandably despondent individuals suffering from CFS that recovery is possible."
"Recovery"? Sorry? What? Where is the evidence for 'recovery' after treatment with CBT or GET?

"The adamant refusal of some patients to engage in psychological or behavioral treatment strategies should be challenged – with empathy, logic, and information – as medically unadvisable"
Utter arrogance and ignorance. This sort of attitude exemplifies the top-down ignorant approach towards medical 'care' which has caused ME/CFS patients so much harm and distress. Look at Tom Kindlon's paper if you want to understand the persistent under-reporting of harms related to CBT/GET. Look at the MEA and AfME patient surveys, where so many patients have reported experiencing severe harm after CBT/GET. Look at AfME's recent paper on the disparities between clinical research and clinical reality, which explores the reasons for reported harms after treatment with GET. Understand the nature of ME and post-exertional symptomatic flare ups, before telling patients that they are misguided. Understand the history of GET, and the way GET is so often inappropriately implemented. Read the PACE trial before citing inaccurate facts. Find out the deterioration rates for the PACE trial, before assuming that GET is safe. Talk with patients before you patronise them with ignorant lectures based on misinterpretations of research literature.

If the hypothesis suggests a biomedical cure for ME, then why introduce psycho-social hypotheses into the mix? It just confuses the issues, and causes distraction.
If an ME patient were to be cured (but still allegedly 'deconditioned') then why would they need GET? There would be no post-exertional malaise, and no relapses, so patients could exercise without any long-term consequences, or harm or damage. GET would totally redundant for an ex-patient.

Deconditioning is not a primary factor of CFS/ME. The PACE trial disproved that hypothesis.

If researchers want to be welcomed by the ME patient community then they need to be careful to avoid ignorant, misguided and patronising lectures, and they need to be careful not to misrepresent the scientific literature, and they need to be careful not to present misinformed and unscientific clinical judgements. (For example, is there any good quality safety data on prescribing GET to severely affected patients?)

...rant over...

The biomedical hypothesis re vagus nerve infection may or may not have some merit.

Yes, it's very unfortunate that two separate hypothetical models of illness have been muddled in this paper.
The vagus nerve infection hypothesis is interesting.

Click to expand...

It happens a lot. Intelligent and well-meaning (and ignorant) researchers conduct good research, but then try to make their research "fit" into the context of the tons of shitty research being churned out in London and Nijmegen.

They have "point A" (their research) and "point B" (the CBT/GET BS) and think they have to get from one to the other. They don't bother to find out the context of the CBT/GET research, read it closely, or analyze it. And the good research ends up sounding totally illogical and moronic.

The Paper said:

The adamant refusal of some patients to engage in psychological or behavioral treatment strategies should be challenged – with empathy, logic, and information – as medically unadvisable

Click to expand...

CBT for ME/CFS is extremely nasty. I've been ill for 2.5 years now, bedridden for weeks at a time, housebound for most of it, and the one time I felt seriously suicidal was a direct result of CBT. The psychologist told me that doctors could not help me, and told me to imagine things never improving.

Undoubtedly her intent was to persuade me that I could only "cure" myself by not thinking or acting like I'm sick and disabled, but I already knew that was bullshit, so by using her visualization suggestions all I could see was endless suffering and disability and being treated like crap by so-called professionals.

Instead of offing myself I got a mobility scooter and became more proactive in trying to understand the biomedical side of things. I ordered more tests privately and found a deficiency that has allowed me to have my orthostatic intolerance pharmacologically treated. I crash just as easily as I ever did, but now I can sit up all day and think clearly.

If I had listened to the CBT idiots, I'd be far more disabled than I am now.

Christ wouldn't that be GRRREEAATTT! My picture of Tony the Tiger didn't work (bloody system ).

Unfortunately, and I think more realistically, a treatment does not always equate with a cure. Indeed I personally feel that a treatment even of the biomedical pop-a-pill variety will not mean that sort of response. If someone taking Rituximab is able to respond like that then terrific. Be nice to know why - but that's really what is being talked about in that MEA statement I posted yesterday...

Click to expand...

Why Rituximab allegedly works? Because it kills off the immune cells that are thought to be attacking our own bodies.

I'd save your limited time and energy for some proper ME science. Like the leaky gut hypothesis. With supporting papers it's a near-complete, evidence-based treatment. To paraphrase the Hitchhiker's Guide, it could be the answer to ME, POTS and Everything!

Has anyone considered why cognitive behavioral therapy (CBT) is such an unpleasant experience for ME/CFS patients? Well, I think I know why CBT feels so awful.

I had just one session of CBT, but I understood very quickly what the therapist was trying to do: he wanted to implant into my brain the habits of goal setting, and objective-oriented behavior.

This seems harmless enough to a healthy person, so why does CBT seem so mentally painful, stressful, exhausting and draining for a ME/CFS patient?

I think the answer to why CBT is so awful for ME/CFS patients lies in a dysfunction of the prefrontal cortex of the brain in ME/CFS. The prefrontal cortex is one of the main areas responsible for the executive functions of the brain: these executive functions form the driving seat of the mind, the higher-level, overall controlling center for task planning, task initiation, problem solving, task switching, etc.

So when you set goals and follow them, you are using your prefrontal cortex.

In ME/CFS, there is evidence of dysfunction of the prefrontal cortex (ME/CFS patients have less gray matter volume in the prefrontal cortex,ᐞ and there is a reduced oxygen supply to the prefrontal cortex during exerciseᐞ).

So if the prefrontal cortex is weak in ME/CFS, this is likely why we find it exhausting and mentally painful to perform executive functions (such as goal setting, task initiation, and task switching), as these executive functions put strain on a weak prefrontal cortex.

I find goal setting so stressful and mentally painful that even if I attempt to set my own goals, it really feels unpleasant to me. I find that I can get involved in tasks that don't require much pre-planning or don't have a specific goal or deadline. But when there is a specific goal or deadline to meet, suddenly there is huge mental stress involved. The stress does not come from the task itself, but from my goal-oriented disposition towards the task. But if I just amble on sweetly in my own time and in my own way, there is no stress in performing tasks.

So it's not that I am not motivated; it just that goal setting feels very painful and stressful to me. Prior to getting ME/CFS, had not problems in setting goals and following them through.

I guess the idea of CBT is to try to beef up the weak prefrontal cortex forcefully (and in fact prefrontal cortex volume is apparently increased after CBTᐞ); but wouldn't it be better to work on the underlying biochemical cause of the weakness of the prefrontal cortex, and fix this, so that ME/CFS patients can become better at goal setting and task initiation. CBT feels like being thrown into a very harsh and cruel military training camp.

There is an article HERE on Cort Johnsons's blog about the use of the drug Vyvanse (lisdexamfetamine) in ME/CFS. Vyvanse regulates dopamine activity in the prefrontal cortex, and if you Google search for Vyvanse and motivation, you will find some accounts about this drug boosting people's motivation.

So this drug might be a better way to remedy the weakness in goal setting and task engagement in ME/CFS.

Hip, sorry to hear about those problems that you have to deal with. Personally I have no problem setting goals, as long as they are within safe levels of activity. But I do have a problem being told that CBT or GET cure or treat ME, when the evidence clearly demonstrates that they do no such thing. At best, they are a coping mechanism, or symptom management technique, for a small minority of patients of a very heterogeneous cohort.